Background
As the leading cause of global irreversible blindness, glaucoma poses an important global health challenge [
1,
2]. Glaucoma is managed as a chronic disease by consensus among ophthalmologists due to its incurable nature [
3]. The reality that patients are being asked to become more actively involved in their chronic conditions means that responsibility for day-to-day disease management is gradually shifting from the healthcare professional to the individual [
4]. Self-management refers to an individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in a chronic condition [
5]. Good self-management includes the ability to monitor one’s condition and influence the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life. In this way, a dynamic and continuous process of self-regulation is established, they will encounter various challenges in managing themselves. For patients with glaucoma, medical management of the disease, physical function promotion and the vision-related life adjustments may be challenging when it comes to self-management [
6,
7].
Increasing evidence suggests that effective self-management is crucial for optimizing patient health outcomes and enhancing their quality of life [
8‐
10]. Improving patients’ self-management ability is a pressing issue that needs to be addressed [
11,
12]. Self-management support (SMS) [
13] refers to the systematic provision of health education and supportive measures by healthcare professionals to empower patients in managing their own health. This includes regular assessment of disease progression and problems, setting management goals, and problem-solving support measures to enhance skills and confidence in managing health problems. SMS has been utilized in the management of chronic diseases such as COPD and diabetes [
14‐
16], demonstrating effectiveness in enhancing biomedical indicators and quality of life, facilitating long-term illness management, and devising solutions to health-related issues.
Tailoring SMS to the individualized needs of patients may enhance the efficacy of the program [
17]. Previous studies have shown the importance of assessing patients’ perspectives or needs for the implementation of self-management in patients with chronic diseases [
11,
18‐
20]. Several studies [
21‐
23] have also reported on the assessments of glaucoma patients with self-management disorders, mostly focusing on medication adherence or a particular aspect. Before we apply specific self-management support strategies, it is necessary to conduct a comprehensive evaluation of the glaucoma patient. However, some other relevant self-management behaviours have not been examined widely and an assessment of the support needs and challenges of self-management for people with glaucoma is lacking. Therefore, to enhance glaucoma patients’ ability to manage their condition effectively, this study employs phenomenological research methods and qualitative interviews to comprehensively investigate the challenges of self-management and support needs.
Discussion
The objective of this qualitative study was to gain insight into the challenges faced by patients in self-management and identify the type of support required for optimal self-management. There have been studies that have explored the disease experience of patients with glaucoma [
26,
27], but the exploration of the fit between the patient’s needs and the support provided was particularly unique in this study.
Our findings show that all patients have expressed a desire for personalized information and care, with half of POAG patients expressing an interest in advanced surgical approaches, while the vast majority of PACG patients being more concerned about how they should care for themselves after surgery. Simply providing routine and standardized nursing education is insufficient for achieving long-term behavioural change, making it challenging to enhance self-management skills [
28]. Thus, it is deemed crucial for healthcare professionals to provide education to individuals with chronic illnesses. Paula Newman-Casey’s Team [
29,
30] has established the “Support, Educate Empower” personalized glaucoma coaching program pilot study, which is tailored to individuals based on their identification, laboratory results, and diagnostic testing. The program garnered high satisfaction rates among most participants and demonstrated substantial improvements in clinical outcomes and medication adherence. Moreover, patients expressed their reluctance to passively comply with healthcare professionals’ instructions and, instead, desired a collaborative partnership with physicians to discuss and jointly decide on treatment plans. The medical decisions that align most closely with patients’ preferences and needs are those made by informed patients who have been presented with disease information and the pros and cons of multiple treatment plans. This approach can enhance patient satisfaction and mitigate medical disputes to a certain extent. Therefore, assessing educational and health literacy beforehand is necessary for effective education. To effectively address patient priorities, tailored information support should be developed based on unique wishes, circumstances and conditions [
31]. Professionals who provide sufficient health information support can help patients not only cope with the challenges of their disease but also reduce psychological anxiety and uncertainty. Moreover, mastering scientific and professional information is conducive to patients’ active participation in treatment decision making and cooperation with various treatment measures, thereby delaying the progression of the disease.
In the interviews, participants expressed the need for hospitals to provide uninterrupted and continuous services using digital resources. Electronic health(eHealth) is considered to be a technology that can replace nurse-caregivers because it is readily available and responsive. But it is doubtful whether eHealth will turn self-management into an expensive and unreported project. As a result, Calvin Kalun Or [
32] has validated the safety and efficacy of eHealth in Patients with coexisting type 2 diabetes and hypertension. The study provided empirical support for the hypothesis that eHealth both improves patient self-care and meets patient self-safety. According to the previous data analysis of our hospital [
33], the utilization of mobile platforms can substantially enhance the management of IOP in glaucoma patients and improve patient compliance with follow-up procedures. Our platform does not currently provide online consultation or virtual meeting capabilities. We expect to further advance the platform by using chat GPT to enhance multidisciplinary collaboration, enable multimodal human-machine interaction, intelligent Q&A and improve patients convenience during follow-up visits. In addition, some of the platform’s users are elderly or visually impaired, and we need to verify usability and acceptability [
34,
35], considering whether the platform meets expectations and is easy to use for the users. Usability evaluation observes defects in the operation of the application, looks for major usability issues, fixes faults, iterates to find critical issues and continuously improves the application until performance targets are met.
Maintaining a good relationship with patients is key for health professionals to implement SMS [
36]. The medical staff who provided care during their hospital stay were highly praised by the participants in the interview. However, due to the unclear definition of SMS among healthcare professionals, medical optimization is often prioritized over establishing patient relationships through effective communication [
12,
17,
37]. A literature review [
38] has indicated that the communication skills of nurses have a major impact on patients’ competence to self-manage their health behaviours. It is crucial to train professionals in supporting individuals with chronic illnesses in self-management. They can master a set of competencies in communication and psychological counselling through training at educational and interpersonal levels [
39]. By gradually establishing a positive rapport through the use of open-ended inquiries, patients are made to feel understood and valued, resulting in a more humanistic approach to their medical care [
40].
Glaucoma exerts a substantial psychological burden on patients and is strongly correlated with both anxiety and depression [
2]. We found that those participants who were alone in hospital expressed strong concerns and anxieties during the interviews. Frequently, these patients expressed gratitude for our presence, as it alleviates the monotony during hospital stay. Our previous cross-sectional study [
41] indicated that anxiety may have a considerable impact on the self-management of glaucoma patients and accelerate disease progression. Therefore, it is imperative that we give heightened attention to patients who are hospitalized without companionship. To alleviate anxiety, meditation, relaxing music, and autogenic training are viable options. Nurses can also help patients through motivational interviews and psychological counselling [
42].
Previous research has indicated inadequate social support among glaucoma patients, leading to diminished well-being and quality of life [
43]. To augment social support, chronic disease self-management programs have gradually incorporated peer and family member support interventions that have been effectively implemented across a range of chronic diseases [
44‐
47]. In a scoping review of peer support in diabetes, the authors recommend that managers consider cultural competence as a cornerstone of implementing peer support. Care must be taken to recruit, train and retain peer supporters to adopt sustainable practices [
44]. Only by acquiring self-care skills, cognitive behavioural skills, communication skills and other relevant courses can peer support workers and family members effectively integrate theory into practice and provide more professional support [
48]. Analysis of the SMS program on HIV and breast cancer reveals that high-quality social and familial support systems can assist patients in mitigating the negative emotional effects of their illness while also guiding them towards a more proactive approach to treatment that improves their self-efficacy [
47,
49,
50]. In addition to medical challenges, some glaucoma patients also face financial burdens. Research studies [
51,
52] on cancer have found that economic toxicity can have a potential impact on patients’ medical adherence, mental health and quality of life. To help reduce the financial burden of cancer patients, health professionals train patients in skills and discuss how to manage symptoms effectively using less expensive preparations and call on the government to improve medical policies [
51,
53]. Thus, we can be equipped with information regarding financial assistance programs or crowdfunding platforms to gain further insight into acquiring financial support. Government should also address the issue of employment for visually impaired people returning to work. This will alleviate the financial burden on patients and incentivize their active participation in treatment.
Symptom management is a very important part of self-management [
54] involving prevention, assessment, nursing and targeted health guidance in relationship to symptoms. Glaucoma patients may have a variety of symptoms, one of the key aspects is IOP monitoring. However, both Goldmann applanation tonometry and noncontact airpuff tonometry necessitate hospital-based measurement of patients. ICare is a portable device, but its results can be easily influenced by central corneal thickness and require a more skilled measurement technique. Currently, many scholars are working on 24-hour IOP monitoring devices such as the implantable Biosensor [
55], contact lens [
56,
57], etc. We hope that soon, patients will have access to comfortable, inexpensive, and accurate portable devices. Additionally, appropriate patient-reported outcome measures (PROMs) [
6,
58] can be utilized to attentively listen to patients, observe their symptoms, and accurately and dynamically evaluate their condition. Healthcare providers should focus on addressing the primary concerns of patients during different stages of treatment and offer targeted nursing guidance based on scientific evidence [
58,
59].
This study has some limitations. The findings may not be generalizable to all patients with primary glaucoma in different settings, given that the study was conducted at a single centre in Wenzhou. Furthermore, patients’ support needs are continuously evolving, necessitating longitudinal interviews to dynamically comprehend their changing needs throughout the treatment process.
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